Monday, January 28, 2008

I've been tired this weekend and had a hard time collecting my thoughts. I guess with my SS hearing over with and a quick trip to Florida for a few days wore me out more than I thought. I have a few meetings in Atlanta this week and then things get a little quiet.

As part of the Early Stage Advisory Group, I have been working on a project with several other people regarding issues that those with early stage alzheimer's have in regards to work, getting insurance, benefits, etc. If you are in the early stage category or a care partner of an early stage person, are reading this blog and could spare a few minutes to fill out a survey, please go to

We are trying to get data to not only help the association to deal with these issues, but for many that are struggling with these issues to have some data to take to some agencies that might be able to help us in the future. We all have our stories and if you are willing to share with us we would appreciate it.

Wednesday, January 23, 2008

After three years and three months I was finally granted Social Security Disability benefits today. I went for my hearing before an administrative law judge. Minutes before the hearing was to begin the judge came out and told us there would be no hearing, that full benefits were going to be provided based on my medical records. My attorney and I sat with the judge for a few minutes, his decision was recorded and we were on our way. I could say lots right now about the Social Security system, but I'm not. I have said quite a bit already. I'm just glad it is over. It's just too bad it had to take this long.

Tuesday, January 22, 2008

I haven't written lately because I've had a hard time putting into words what I am feeling. I'm very anxious and tired. There are a lot of things on my mind that I can't get resolved and that is frustrating to me. Things just seem to be fuzzy for me. I'm not sleeping at night and that doesn't help.

My hearing for social security finally comes tomorrow. Maybe after that I will be feeling better.

Wednesday, January 16, 2008

The last two nights CBS has been running an investigative report on Social Security Disability and how hard it is to get it. It was a two part segment and the links to the printed versions are below this post. I learned a lot from these pieces and coincidentally, my case is being heard next week. It has been almost three years of waiting for me. My husband and I met with the attorney that my insurance company hired to help me through the process. I learned even more interesting things from him yesterday.

My claim meets all the criteria for benefits. And, this claim has met every criteria from the day it was submitted. But, it was denied. The attorney went through some of the "checklists" the SS administration uses to grant or deny benefits. In certain areas the person looking at the claim had checked off certain things that were impossible for me to do. If you had so many of these things checked off you were eligible for benefits. I met the criteria. Two years ago Social Security sent me for some neuro psychological testing. I already had some testing done during my diagnosis process but Social security sent me again. The tests were even more difficult the second time around. But, Social security sent me a letter and said basically that the tests showed that I was capable of holding down a full time job. I asked SS for a copy of the results from the test and I was never given a copy. Yesterday, my attorney told me that the second test I took was no better than the first and even worse. It basically said that I was unable to perform at a certain level and that I had limited functionality. But, SS said otherwise after reading the report.

The piece on CBS said that 2/3 of the people that get denied for Social Security disability the first time, never re apply -- thus saving the government lots of money. I was denied three times, and I will finally get my day in front of a judge next week.

If you are fighting this battle, don't give up. Talk to your legislators, talk to whoever will listen. A new administration may be coming to town and now is the time to speak up.

Friday, January 11, 2008

Last night on The NewsHour with Jim Lehrer, there saw about a 12 minute segment on Early Stage Alzheimer's Disease. I'm proud to say that five of my colleagues from the Early Stage Advisory Group that I serve on from the National Office of the Alzheimer's Assn. were featured. Two of them, Rich and Jay, held an early memory loss forum last year in LA and this piece was done at that time. Please take a minute to watch it -- they did a great job and you can see what type of people they are. Here is a link http://www.pbs.org/newshour/video/module.html?mod=0&pkg=10012008&seg=4

If you like what you saw and can take a few minutes to send PBS an email, please do. Thank them for their support and their time for running this segment. The email address is onlineda@newshour.org

Thursday, January 10, 2008

I have a hearing scheduled for my Social Security Disability. It will be later this month. After waiting almost three years I can't believe a judge is finally scheduled to hear my case. It should be interesting.

Sunday, January 06, 2008

Dee from Canada asked about my last comment regarding talking on the telephone. I know that many others with AD have this problem as well. Talking on the phone is difficult for me because it is hard for me to follow the conversation. I have to concentrate for too long and I can't seem to do that. I definitely prefer email because I can go back and re-read it if I need to. It sounds kind of silly that it is hard to talk on the phone, but it is just so hard to keep focused and to follow the theme of the conversation. Plus, when talking on the phone the conversation keeps jumping around and I have a hard time jumping from one subject to the next. My friends understand this so that is good.

One thing about our Early Stage Advisory Group is that once a month we have a teleconference call. It lasts between 1 1/2 hours to 2 hours. Needless to say, after a little while I have a hard time keeping up as I am sure many others on the call do too, but don't admit it! But, it is the only way for us to all communicate at the same time since we are spread all over the country. We do communicate through a secure message board when we need to and we do email, but the phone conversations are the best way for all of us to get together.

We have a busy year ahead. It kind of makes my mind spin just thinking about things. Three weddings for one thing -- one of which is my son's! If I can make it through the summer I'll be o.k. I worry alot about how my health is going to be in 6 months or 9 months and I don't know why I worry because there is not one thing I can do about it. Don't they say you shouldn't worry about things out of your control? I guess it is because there are so many things going on this year that I wonder how I'll be feeling when it is time for those events.

Numbers --186 Christmas cards received120 days until my son graduates from Stanford Law School6 days in May when my husband and I will be home together22 days spent in hotel rooms in May7 pounds I gained over the holidays (not a good thing)1 hour spent writing this blog -- did I mention how bad I am getting at this?4 squirrels currently inhabiting our new bird feeder we got for Christmas

Now, I have 45 minutes to get ready to go to the gym -- to get rid of those 7 pounds!

Wednesday, January 02, 2008

A comment left by Jim on the post below brings up the question about an experimental drug discussed in the Still Alice book I mentioned. To answer your question, Jim, I'm not positive about which drug in particular Lisa was talking about in her book, but about the time the book was being published, a drug was very close to being brought to market called Alzhamed. However, the clinical trials did not come out as good as the pharmaceutical company was hoping for and the drug was not marketed afterall. The only drugs I know of at the moment are Aricept, Exelon, Razadyne and Namenda. Namenda is usually taken in conjunction with one of the other three drugs. I belieive this is correct, but if someone else is reading this I'm sure they will correct me if I am wrong. Many of us had our hopes up for the Alzhamed drug -- but there are several other drugs still in the pipeline in clinical trials. Perhaps if Lisa looks at the blog she may also be able to address this issue. And, I do agree with you that Still Alice is sad.....but so is this disease. Thanks for your comments.

Another event that I wanted to mention is another event happening here in Georgia. It is being hosted by the Georgia Chapter of the Alzheimer's Association. The speakers are great --I've heard many of them, so if you can spare a day on January 23rd, you might want to check it out. The link is http://www.alz.org/georgia/in_my_community_education.asp.

In the hustle and bustle of the holidays there were a couple of things I have forgotten to write about -- imagine that!

Still Alice, by Lisa Genova -- get this book if you know someone that has Alzheimer's or know a care giver for someone with Alzheimer's. I received this book for Christmas and once you start reading it you cannot put it down. "Alice" is a Harvard professor who is diagnosed with Early on-set Alzhiemer's. Lisa takes you on Alice's journey from the diagnosis to the latter stages of the disease. It is so real, it is hard to believe that Alice is a fictional character. I had to actually laugh out loud when I read some of the things Alice was dealing with because it was so real. Her inability to talk on the phone was one of them -- I have such a hard time with that because I have a problem following the conversation. But, it is definitely worth the read -- don't wait --get it now. You can order from Amazon.com. After you read it, I'd love to hear what you thought. Thanks to Lisa Genova for such a wonderful book.

Understanding Dementia and Alzheimer’s: What Every Health Care Provider Should Know -- is a one-day educational event for those who want to gain a greater understanding of dementia-related conditions. It is being sponsored by Georgia Southern University and it is in Savannah Georgia on February 1, 2008. More information can be found here: http://ceps.georgiasouthern.edu/conted/dementia&aging.html Even if you are not a "health care provider" and you are interested in learning more about Alzheimer's you might want to check out this event.

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About Me

I was diagnosed with Early On Set Alzheimer's when I was 46 years old. I am now 61 and working in Advocacy to help fight this disease. I speak on a local and national level about dealing with Alzheimer's while living it. Hopefully, my perspective can and will help others.